Tag: Arthritis

The Cocktail: Where Things Stand

We’ve gone over all the current ingredients to the arthritis cocktail, now to a bit of discussion on where things stand.

Last Wednesday, I met with the new rheumatologist. According to various surveys, she’s either one of the top 5 or the top rheumatologist in the state. I saw a bit of ego and she clearly doesn’t hold with supplements or with trying to get into clinical trials. Her contention is that the current cutting edge is not going to be able to regenerate the cartilage in my right shoulder.

She could be right. It depends on a host of factors, including if the stem cells, ECM, and other factors can find something to latch onto or otherwise cause them to grow into cartilage. Supplements, as noted in the previous writings, work on at best one third of the population, with a number of them clocking in at less than ten percent — by themselves.

Part of the reason I chose to do a cocktail for my experiment is that while individually the rate of effectiveness bites, one can potentially gain some synergistic effects by using a cocktail. It’s worth a shot.

One thing she doesn’t yet know about me is that to some extent, I don’t care if I get a perfect fix. What I would like to do through my experiment and by possible participation in research or clinical trials is make it more effective for others in the next iteration. I will take whatever relief I can get, but the important thing is advancing that cutting edge for the future.

As of now, I’ve been on the main component of the cocktail for almost six weeks, and the current full cocktail for almost four weeks. To get a fair assessment, it really is going to take three to six months. That said, here’s where things stand.

First, I had blood work done last Friday that shows that, for now, the supplements do not appear to be causing any problems. I wasn’t thrilled with a couple of readings, but they are still well within the proper zone. Remember, if you take supplements you do need to keep your doctor in the loop. Some supplements can and do effect other medications and can have some harmful side-effects. Be smart, do your research, and keep your GP and/or others in the loop.

Second, while it is tentative at this point, I do feel somewhat better, particularly in areas other than the shoulders. My left shoulder feels a bit better than it did, but that area is particularly hard to assess.

Part of the problem in assessing things is that there are a lot of questions right now. One of the first and foremost to my mind is if what I have is simple osteoarthritis. It’s not acting like it, and while past testing said I did not have rheumatoid arthritis, that doesn’t mean I don’t have something similar to osteoarthritis but is a step above. There are some possibilities.

There is also a good chance that something else is at play on top of the osteoarthritis if that is indeed all I have. It could even be more than one thing. Right now, everything from MS on down is on the table. That’s one reason I gave up seven vials of blood last week for testing, along with getting a host of X-rays. To be honest, I fully expect to undergo more tests.

That said, sometime in the next two weeks, I should have results and hopefully some answers to go with the questions. It is likely that we may even have more questions. But, if we can start eliminating possibilities even as we search for some definitive answers, it’s a good start. If we can figure out what (all) is going on, it gives a good place to start to do something about the problem.

Until we do, I am resistant to the idea of joint replacements for all the areas identified by the surgeon and the rheumatologist. On the shoulder, I’ve yet to speak to anyone who has had the operation who would do it again. Would love to hear from anyone with a different view. On the other replacements, as well as the shoulder, I’m concerned that whatever is going on could effect the quality and longevity of the replacement. Yes, if I didn’t mention it before, the rheumatologist has suggested additional replacements are needed beyond my shoulders.

So, are the supplements helping? Tentative yes. Do we know what is going on in my body? No, but I think we are starting to have some good questions and getting data for some answers.

That’s where things stand for now. More soon.

The Experimental Cocktail: The Last Two Current Ingredients

The current final two ingredients (as ingredients are subject to change after 4-6 weeks) are the two for which there is the least scientific data. That said, they offer a chance to kick some things into action.

First up is cinnamon. Yes, the spice. It’s also long been used for medical purposes (as with many spices). This write-up provides an overview of it’s uses and a good bit of data (such as it is). Frankly, there is a lot of potential there, though studies appear to be sparse and the governmental studies (unsurprisingly) are ambiguous.

One does need to be very careful, however, about the source and strength of the cinnamon. In short, there are two types of cinnamon on the market: Ceylon (True, or British) and Cassia (Saigon Cassia). While cinnamon would appear to have many positive aspects, one particular compound in it can cause liver damage or failure in high enough dosages. Cassia/Saigon Cassia has a (much) higher concentration of this compound. Therefore, I am taking a supplement made from Ceylon cinnamon.

While the governmental data is ambiguous, there are enough other studies (including some governmental) that indicate it can have antioxidant, anti-inflammatory, positive blood-sugar and cholesterol activities, and anti-cancer actions. Some of what I’ve read also indicate it could be something of a catalytic in terms of helping the cocktail work. So, in it is.

The final ingredient has, frankly, the weakest scientific evidence — at least when it comes to anti-inflammatory properties. However, it does provide all the components needed for the formation (and restoration) of cartilage. The reason I’m taking it isn’t the alleged anti-inflammatory properties, it’s the chemical building blocks it provides.

There are 16 types of collagen, but Type II is a component of cartilage, while Type I and III are in your skin. While there are many sources of the amino acids that are collagen, what I’m trying to do is provide my body with easy-to-digest/absorb amounts of those that can help my joints, skin, and other tissues. So, I’m taking a supplement that provides Types I, II, III, V, and X. It is also Keto-friendly, which helps.

So, that’s the current mix. At this point, I’ve been on this cocktail for about four weeks. While I would prefer to be on it six weeks before saying antyhing, I probably will release some initial assessment next week.

BTW, if you care to help with the experiment, feel free to hit the tip jar in the top right corner, or use the Amazon wish list in the same spot as what I’m currently using is listed there. Thanks.

The Next Cocktail Component: Curcumin

Well, actually, I’m using a version of turmeric curcumin that also includes ginger and bioperine black pepper. Why?

Turmeric has been used in Asian and Indian medicine to treat arthritis since ancient times. It is not only a tasty part of most curry mixes, but the curcumin is believed to be the active ingredient in the fight against arthritis.

Turmeric has also been evaluated in treating a number of other health issues. Care is needed in dosage, as the turmeric/curcumin can act as a blood thinner.

The data, however, on the effectiveness of turmeric/curcumin is mixed. While some studies have shown strong effects, other studies don’t support those initial findings. While the data is mixed, one study showed the interesting result that it was more effective at preventing joint inflammation than prevention. Another study showed that it could help prevent cartilage inflammation.

While mixed, there is at least some data showing it could help. More than that, it could help prevent joint/cartilage inflammation — essential if I want to strengthen or rebuild irritated/damaged cartilage.

Now, why ginger? After all, ginger is a relative of turmeric and also shows anti-inflammatory properties. In fact, the studies on ginger show stronger results than those on turmeric.

Finally, there is peperine. This extract of black pepper is often sold under the trade name BioPerine. Peperine has its own anti-inflammatory properties, as well as some data that it can help with the absorption of other nutrients. The theory is that by including it with the ginger and curcumin, it aids both by helping absorb the compounds as well as adding it’s own punch to the mix.

Which makes sense. After all, for the body to absorb calcium, it takes vitamin D — which is why many calcium supplements contain some vitamin D. It is the same theory behind putting together glucosamine, chondroitin, MSM, and hyaluronic acid into a single joint supplement.

So, I chose a curcumin supplement that also included ginger and peperine. If it works, it should help with some of the cartilage issues as well as acting to block different types of inflammation (and different from the joint supplement).

The First Cocktail Element, A Cocktail Of Its Own

The first element in the supplement cocktail I’m taking in my experiment is a joint compound. These compounds are sold under a variety of names, but all contain glucosamine, chondroitin, MSM, and hyaluronic acid at a minimum.

Glucosamine is a supplement used to reduce inflammation. By itself, the compound has, by some studies, no statistically significant effect.

Chondroitin sulfate is a complex carbohydrate that helps cartilage retain water. As noted in the previous link, a study found that chondroitin did result in a reduction of the same inflammatory markers as glucosamine for a bit over a third of the study participants.

Combining the two ingredients has had mixed results, though one of the latest studies showed that for people with moderate to severe joint pain there was statistically valid reduction in that pain. An overview of studies can be found here. Note that at least one study raised the possibility use of the supplement could hurt some people.

MSM is shorthand for methylsulfanylmethane. Frankly, there is very little data on the effectiveness of MSM, how it works, and the long-term benefits or safety of the compound. The one clinical trial I’ve found did see “significant” decreases in pain and impairment, while also showing benefits for daily living activities.

Hyaluronic acid plays a diverse and apparently important role in our health. It is a anionic polysaccharide found in a variety of tissues, as well as in the liquid of the eye and in the skin. Within our joints, it is both a cushion and a lubricant. Studies have shown that it does have proven effectiveness in arthritis of the knee. That said, there are those who believe that while oral administration works, better results can come from injection.

Supplement makers now combine all of these into one compound. The theory appears to be that you get all the items the body needs in one package; and, maybe they work better together as does glucosmaine/chondroitin.

If you are allergic to shellfish, you need to be extremely careful about the joint supplement you use. Many source elements (glucosamine/chondroitin) from shellfish. The first brand I tried I bought online, and in examining the box it indicated it was not from shellfish. The box that arrived was sourced from shellfish. Yes, I took it anyway, and did not react. However, I’m now switching brands to one I bought in person that is shellfish free.

I am also looking at changing the methodology. The original brand recommended all three at once at breakfast. I’m now looking at spacing it out to three times a day.

I’m only a couple of weeks in on my experiment, so have no real data to report yet. More soon.

The Current Cocktail

No, not that type of cocktail, alas. What I am talking about is the cocktail of supplements I’m taking to try to reverse damage from arthritis.

The good thing is, I am my own human subjects committee. The problem with that is that it cuts out some potentially useful input — which I what I hope to get from you good readers.

So, the goal is to reverse damage not only in my shoulders, but elsewhere in my body. The absolute worst case scenario is that I do damage to my body with the supplements. The study worst case is that the supplements do nothing. Median and mode are that it slows the progress down or that it halts the current deterioration. Best case is that it actually helps restore some/most/all joints.

Based on my genetics, my conditions — which includes several issues not listed in this discussion — and an eye towards participation in regenerative medical or advanced materials studies, I’ve chosen the following cocktail:

Joint compound, consisting of glucosamine, chondroitin, MSM, and hyaluronic acid

Ceylon cinnamon

Turmeric curcumin with ginger and bioprene black pepper

Multi collagen protein

I’m taking these along with Meloxicam and Hydroxocobalamin (prescribed by my doctor). I’m considering a couple of other additions to the cocktail, but want to see how this does over the next month. My goal is to run the experiment for six months, and decide how and if to continue based not only how I feel, but by what shows up in the blood work, X-rays, and other hard data. Meantime, I’m asking for a blood test in a few weeks to be sure I’m not spiking or crashing any major levels, and to set a baseline for future reference.

In the days ahead, I will take each component and talk a bit more about why I picked them. Most were chosen for more than one reason. Glad I’m not traveling right now, as given the amount of spice-based supplements if I were captured by cannibals they would likely consider me pre-seasoned meat…

My Take On Supplements

Let me start by stating the position that while there are clearly some supplements that have a positive benefit, I am on the whole a skeptic about supplements. There are a number of reasons behind this stand.

First, one must keep in mind the history of supplements, which includes the whole “snake oil” legacy. Snake oil refers to a range of products, mostly liquid “elixirs,” that were sold touting their ability to cure anything that ailed you. If you look back at them, the bell curve is a bit skewed. Yes, there were a few of them that may well have done some good, but, there were a lot of them that could, would, and did do harm. The middle section of no harm/no fowl appears to be a bit on the small side.

The modern supplement phenomenon derives, IMO, from two different areas. The first is the “natural” movement which pushes natural remedies as an alternative to modern medicine. The second is modern medicine, which has acknowledged that any number of botanicals do indeed contain useful compounds and began to actively explore to find more. Both have their points, and it is somewhat funny to have watched these two different systems be almost forced to work together.

On the natural side, there has always been a bit of a tendency to push the “cure what ails you” side of things. This herb, or this supplement, would do the job. The problem is, not every supplement works on every individual. Your genetics and your gut biome play a part in if it works for you. What few studies have been done appear to suggest that some supplements may only work on less than a third of the population. In fact, some appear to work on less than ten percent.

Like many people, I take a multi-vitamin. In all probability, about 99 percent of it passes right through me.

Another reason for me to be a skeptic is that since the supplement industry is unregulated (for which I’m actually glad and support it staying unregulated), you do sometimes get some scams. I remember a couple of decades ago reading and hearing about a supplement that bragged of having a thousand times the daily recommended amount of calcium. True claim, it did. However, the calcium was in a form that could not be processed and used by the body. When it comes to supplements, including the new hot thing, caveat emptor.

You also have to be careful about amounts and interactions. Supplements can interact with each other, and they can and do interact with your prescription medication. There are a number of vitamins, minerals, and other compounds that you can get too much of — with potentially deadly results. Natural does not automatically equate to safe.

For this reason, I’m keeping my doctor up to date on what I’m taking and the amounts of critical compounds in each. I’m also asking for some additional blood work to be done to be sure I’m not doing something like spiking my calcium or other levels, or otherwise causing a problem as I attempt to “cure” the target issue.

Since my health is ultimately up to me, I’ve not only been researching the supplements I’ve chosen but even the brands and the forms of the supplements. I’ve also been choosing on the basis of trying to be sure they will work together, not against each other.

Will any one supplement work to make a positive difference? Will the particular regime I’m planning work to make a positive difference? Am I just generating very expensive urine and pissing away money? Ask me in about three to six months. That’s how long it’s going to take to have a realistic idea based of blood work, X-rays, etc.

Meantime, I plan to share a bit more on what I’m trying and why I have chosen those particular supplements. If anyone out there has a suggestion, feel free to chime in.

Why Not Replacement?

Given the large number of people who have had successful joint replacements, why not go with the surgeon and have my right shoulder done immediately? Good question.

Unless it is an emergency, I think it always better to take the time to review options, get second (or more) opinions, and make an informed decision about any medical treatment. Remember, the person ultimately responsible for your health is you, and it is incumbent upon any responsible person to be informed and to make informed decisions.

In this case, there are several factors at work.

Back the second time I worked for NASA (as a contractor), I worked commercial space research and as part of that worked with the Center for Commercial Applications of Combustion in Space. The team there was working with partners on advanced bone replacement materials. The problem with the implants then (and it applies to current day as well) is that they are solid chunks of metal or other similar materials. Natural bone may be smooth on the outside, but inside they are quite porous. Thus, you have density and mass differences that can and do affect the system on a mechanical basis. The stem of a replacement has to be glued in place, and that has caused problems on occasion.

The work CCACS was involved with produced a metallic/metallic-ceramic replacement that was smooth where needed, and had a porosity effectively equivalent to natural human bone. The research was focused on how to get the same results on Earth so that custom replacements, as close to identical to what was being replaced as possible, could be produced on Earth in the OR. Since the reaction was exothermic, the replacement parts would be sterile.

The truly advanced work, however, was focused on developing materials that would serve as a scaffold for natural bone to grow. As the patient’s bone grew into it, the replacement would dissolve and pass out of the body until after a period of time the patient was left with natural healthy bone in place.

There is a good bit of research underway (see here for one example) on advanced materials. Such advanced materials are needed because of a different area of medical research: regenerative medicine.

Regenerative medicine uses things such as stem cells, the extra-cellular matrix, and even some genetic manipulation to heal. In fact, using regenerative medicine, it is possible to not simply heal, but to restore a site, organ, limb, etc. to what it was before. Ultimately, they are looking at being able to regenerate limbs, organs, and other structures. To call it an exciting field is an understatement.

While separate, regenerative medicine ties into a variety of anti-aging research. This research focuses on restoring the body to the cellular conditions of youth.

Now, having worked with such research at NASA, and having had the honor of working with the late Leslie A. Geddes at Purdue — who pioneered several fields of biomedical research including regenerative medicine — I’ve been keeping a bit of an eye on such things. As Glenn Reynolds the Instapundit often notes, “Faster, Please.”

And I do want to see it faster, much faster, please. Based on current research, and even allowing for the FDA approval system that seems designed to prevent advances and competition, I believe I have a good twenty to forty years of life ahead of me barring something catastrophic. Which gets back to the current state of joint replacement.

Current materials are not designed to take advantage of future advancements. Nor are they designed for the life of the patient. The sad fact is that for many types of replacement, you can count of having to have the replacement replaced about every fifteen to seventeen years. So, at least two if not three replacements.

I would also note that because of the issues connecting bone with replacement, I would be limited to picking up no more than 15 pounds at a time, not have full range-of-motion restored, and face other limitations on activities. This would include many things I enjoy doing. Add in that at least two people I’ve talked to who have gone this route would not do the replacement over again, well…

So, I could opt for immediate replacement with parts that are close/semi-close to the size of my bones and will limit my activities because of the mechanical and other differences. These parts also are not designed to work with near-term or long-term advances in medical treatment; but, the replacement would reduce (though not necessarily eliminate) the pain in the joint and prevent further damage.

Or, I can opt to wait and experiment. The experimentation is potentially two-fold.

The first part is to try a supplement regimen that could slow, or even stop, damage not just in my shoulders but my entire body. Such a regimen has reportedly resulted in healthy regeneration (to some extent) in some patients. The odds, as I understand them from medical research, are long. I’ve faced some long odds in life before, it’s worth a shot.

The second part is to research clinical trials in regenerative medicine and advanced bone replacement materials. If I qualify for one or more regenerative medicine trials and participate, then I have the potential for at least partial restoration if not full. Add to it the fact that by participating I can help drive things forward faster please, even if it does not help me, then it’s still a win.

If regenerative trials don’t work out for whatever reason, then I will look to advanced bone replacement materials trials. If I have to have a replacement, why not go for one designed to take advantage of advances in medical technology?

Meantime, I’ve lived with chronic pain for years, decades even. I don’t like it, am working on dealing with it, but can handle a bit more. So long as I minimize damage to the shoulders and other joints being attacked by arthritis, I can and will put up with the additional pain.

That’s it in a nutshell, and there are several areas that can, and may be, explored in greater detail later. However, for now, it lays out the base case for my decisions.

What Is Arthritis?

Actually, that’s a very good question. It’s one that I wish I had asked a long time ago.

The term arthritis actually refers to more than 100 different types of arthritis and related conditions. The two most commonly diagnosed types of arthritis are osteoarthritis and rheumatoid arthritis. While arthritis primarily involves joints, certain types can also affect major organs.

The damage to joints can be mild to wild. On the milder side are stiffness and soreness. On the wilder side, the cartilage can be completely destroyed and the bones of the joint damaged both by inflammation and by rubbing against each other.

There are a number of factors that go into arthritis, from family history to injury. Even infections can result in arthritis in joints. In my case, some things I was exposed to as a small child put me at a higher risk of inflammatory problems. Add to that my having done things like jumping out of planes, rappelling, and other activities and you get a good chance of developing arthritis. And bone spurs.

In my case, it would appear that something has caused my osteoarthritis to become very aggressive in my shoulders. So much so, I’m going to be asking the rheumatologist I’m seeing in January if that diagnosis needs to be refined.

The X-ray of my right shoulder shows that the cartilage is gone; the bone ends look like the lunar landscape (with some small bone spurs acting as mountains); and, a chunk of my humerus is missing. That missing piece is most likely the piece of bone seen trying to work it’s way down towards my chest. The left shoulder looks better, but not by a huge amount.

There are a number of treatment options for arthritis. For my “just” osteoarthritis, I’ve been taking a drug called Meloxicam for the past three years off and on, and it has helped with some of the inflammation and related issues. Looks like more may have been needed. In addition to my shoulders, I have symptoms starting in my back and neck.

In the experiment I am starting, my goal is to do all I can to help my body heal itself. The best outcome is that through what I do is to reverse the damage. The middle-case outcome is that I help as much as I can on the shoulders, and slow or stop progression elsewhere in the body. The worst-case outcome is that over the next six months I generate very expensive urine courtesy of the supplements and things continue as they are.

The odds are not good. In fact, I’ve been told that the odds of any one supplement working on my condition (and with my genotype, etc.) is less than ten percent. That said, if I don’t make the effort, I will never know if anything could work. There is also the fact that by taking multiple supplements, I run the risk of side effects. To help reduce that risk, I’m keeping my primary care physician aware of what I’m taking and will be requesting some extra blood tests to be sure I’m not causing problems rather than fixing them. In particular, I want to monitor the amount of calcium so that I don’t spike it.

Then again, I’ve beaten long odds a time or two before. Nothing ventured, nothing gained.

Getting Back

Yes, I am working on getting back to writing regular posts here. I’m also focusing on getting back in other areas of life.

About five years ago, I was given a mistaken diagnosis of cancer. While I thought it was wrong from the start, I upended my life to deal with it. I stepped down from Mission: VALOR, and stepped away from a number of other things. I thought having a procedure done that proved by biopsy that I did not have cancer was the end of it. However, I just spend the last six or so weeks having to re-prove I did not have cancer because a doctor who diagnosed me by looking at me put it into a major (local at least) medical system that I had cancer.

Add in a botched colonoscopy that resulted in an ER visit, the administration of epi, and a few days in the hospital (and cost me a job), along with some other things that happened, and it’s been quite a time. I’m told that God does not give us more than we can handle, and for all I do believe that I also get the impression that God thinks I’m a bigger badass than I think I am.

Now, I have another challenge that I will be blogging about some each week. I’ve had chronic pain for a few decades now, which is not the issue save that by the time this issue was something I noticed, a lot of damage was done.

A few years back I was diagnosed with “just” osteoarthritis. Just. Well, it has done a number so that three weeks ago it was recommended that I have an immediate replacement of what is left (not a lot) of my right shoulder joint, and that I will probably (according to the surgeon) need the left done soon too. Oh, and a piece of bone that broke off in my right shoulder joint is now trying to work it’s way down into my chest.

I consider a total joint replacement using current tech to be a less-than-optimal solution. In fact, I think it a very bad idea for reasons I will lay out soon.

Instead, I am conducting an experiment on myself to see what can be done with supplements, despite the fact that the best of them work on only about thirty percent of the population and many of the more specialized supplements appear to work on less than ten percent. Again, more to come on this as part is on what can be done for the shoulders and the rest is to see if we can slow, halt, or reverse some of what is going on elsewhere.

I’m also working to see if I can get into some clinical trials involving regenerative medicine; and, if that fails, clinical trials for advanced bone replacement materials. I will share more as I can, as well as trying to get back to commentary on space, national defense, and other issues.

Your patience is appreciated, as is the readership of the couple of you who still show up here.